I'm on my knees

[Podginese]

Hi,
I'm new to this forum. I'm not sure what I want or need, but here goes. My mum was diagnosed with Alzheimer's just over 3 years ago. With hindsight it's obvious that things were not right a couple of years before this. She lives at home with my dad. I'm an only child, and there are no other family to turn to/rely on. I live with my partner and am only a 15 min drive away.
Things have obviously deteriorated over the last three years, to the point where mum now needs constant care and assistance with all of her ADLs. She will not tolerate dad assisting with any element of her personal care and so I was going to her on a daily basis and giving her a bath etc. However, as I work full time I wasn't able to sustain this for any longer than a few months ( which I feel guilty for - I keep thinking that maybe I should just give up my job and look after mum full time - but in all honesty, I really don't want to) so we arranged for carers to start in November last year. This went well for a few weeks, but things have deteriorated further as mum has become incontinent. I'm not sure if there are some feelings of shame re: this on her part, but she is now refusing all care to the point where she is becoming extremely agitated, upset and angry at the mere mention of washing/bathing. We've tried all sorts of ways to adapt the process, doing it in different ways, at different times etc. but nothing is working. The carers are great and are working with us, but obviously there is a limit to their time and what they can do. So now I'm in a position where I'm once again going up to help out with mum on an almost nightly basis. It took me over 2 hours last night to get her to let me just wipe her bottom. On top of all of this I'm so worried about dad as he's just not coping. God knows it's hard for me, but he has to live with this 24/7. I'm at the end of my tether. Is now the time to start thinking about full time residential care? This terrifies me as you hear so many horrible stories about how people are treated in these places. I've got nothing to compare this situation to. How do other people cope?

 

[Grannie G]

Hello Podginese

It might be time for you and your dad to start thinking of residential care but first of all I would suggest you consult your mother`s doctor to see if anything can be given to help her anxiety.

You will find many here on TP with nothing but praise for the care homes they have experienced. Yes there are poor homes but if you visit and inspect homes you should be able to find somewhere you will be able to trust.

The AS Factsheet about choosing a care home may help.

https://www.alzheimers.org.uk/download/downloads/id/1787/factsheet_selecting_a_care_home.pdf

 

[Chemmy]

Hello and welcome to Talking Point.

I think many of us can understand your frustration and I think you are right not to give up your job. A reluctant carer can become a resentful carer, and that's not helpful for either party.

Have you talked things through with your Dad? How does he feel about the idea of a care home? He might need your 'permission' to speak openly and honestly about his feelings as guilt often means people aren't as frank as they should be in such situations.

It took the staff at my mum's CH six months to persuade her into a bath, and she took a swing at one carer who tried to help her wash, but that's par for the course and a good care home with experienced staff will be able to deal with things like that.

 

[LadyA]

Hi podginese.
As Grannie G said, there are many positive experiences of nursing/care homes too! I think it's just that we tend to hear more about the bad ones, maybe. My husband had always been adamant that he was never to be put in a nursing home. He had a life long horror of them. However, as his dementia progressed, he also became very resistant to personal care. Violently resistant, in fact. He wouldn't allow me to help him at all, usually, and on the occasions he did, he would get very upset. We had a male care assistant once a day, who used to help with washing him, but my husband sometimes got aggressive with him too. Finally, there was no choice but a nursing home. And once he settled in (which did take a few weeks), I was sorry I hadn't done it earlier. He loved it. Most of all, he loved having uniformed, male staff to help him. They never had any problems with him. He recognised by their uniforms that they were there to take care of him and help. And he took his medication like a lamb, from a uniformed nurse, where at home, I had had to hide his medication in anything I thought he would eat or drink, so it was hit & miss whether he got it regularly or not. He thrived, gained weight because he loved eating in the dining room (which was set up like a nice restaurant) and they just gave him lots of snacks. It wasn't the most up to date nursing home. It was in an old building, and was a bit shabby. His room wasn't en suite, as it was in the older part of the building. But he was happy there, and well looked after.

And, something that's often overlooked, we were able to regain a quality of relationship that had been completely eroded by the sheer drudgery and exhaustion of trying to care for him 24/7. He didn't really know who I was, and didn't remember my name, but he knew I was someone he loved very much, and his whole face would light up when he saw me coming. We spent happy and relaxed afternoons just watching tv together, or listening to the visiting musicians or having tea together.

So don't think of a move to a nursing home as necessarily a negative thing for either your mum or your dad. It could be a positive thing for both of them, and for you. xx

 

[Morty]

Sometimes in some cases a tweak / change of meds help,get doctor opinion asap
Unfortunately thats why nursing homes are there,they are not all nightmares but they are all understaffed etc imo,good luck

 

[HillyBilly]

Hi and welcome to TP. Well done for stepping in and doing what you can to help your Mum and your Dad. It's so hard when personal care is refused. As others have advised, a tweak of meds might help in the short term. Living with someone with incontinence is very hard and so you do have to think of your Dad as much as your Mum. If you're at the end of your tether then his probably ran out some time ago.
It sounds like it's time to arrange some respite, as much for your Mum (so she can get some professional 24/7 care and attention) but more so for your Dad.
Do try to take some time to start having a look at what care facilities are available in your area. It's better to be prepared than have to make a rushed or forced decision.
Best wishes and do keep posting x

 

[Sweetsheep]

A reluctant carer can become a resentful carer, and that's not helpful for either party.

Hi

Chemmy couldn't have spoken any truer words than that sentence! I know because I am in that exact position. This might be a bit of a waffle but I want you to understand how important it is to make the right decision. As I wish I had found this forum before any decisions got made in our case. Situations can change so quickly too.....

Please don't do anything unless you are 100% sure. Don't give up your job, don't move in, and don't move her in. I speak from experience because I was in the same boat as you and did all the above and now we are in a situation which is making everyone unhappy! There is a massive emotional price to pay.

These decisions also cost money. I gave up my full time job to go part time to help with the caring. We are now struggling financially and cannot save any money. Instead we are getting further in debt! It is putting a great strain on our relationships with each other and everyone else too.

We had to move house to accommodate MIL all at a massive cost. We are paying a lot more money for a bigger house. I no longer live in my home but what feels like a dementia facility..... Which in itself is a nightmare because I am struggling to maintain it with a PWD...

My husbands Job changed during this time and he is no longer here to help most weeks and I have now become a very unhappy person as I am caring for someone I hardly know. And who isn't very happy with me either!

Now I have to battle every day to get her to shower or clean herself or change out of dirty clothing. And she does not like the fact that "this woman" is telling her what to do. I am exhausted and treading on egg shells all day long. And then at night I don't sleep....

Looking back now, I really wish we had put her into a care home. I wish I had been strong enough to say no. But I thought we could just try and see. But we have made promises and now feel stuck. And now we are in an awful situation which is going to take more upheaval and there is also an emotional issue of guilt now involved!

You have to be a very strong person, with thick skin and absolutely no emotional issues if you do decide to take this on. Something I will admit I don't have! And it took this to learn that lesson!

Please don't be scared of a care home...I now see that there are many many great ones out there and only after joining this forum, did I realise that we too had other options.

As for your Dad. He is probably exhausted! But feels trapped. There is the issue of the promises he made to your Mum. And then there is the reality. And we can get very stuck between the two. I think a frank discussion with him and saying that it's ok to let go and let someone else do it. After all, it is an illness, and at some point, if an illness is regressive.....most people need professional help. Dementia or Alzeimers is no different.

Reading about what happens and then living what happens are two completely different things..We are not all natural nurses or carers as much as we all wish we were!












Sent from my SM-G930F using Talking Point mobile app

 

[marionq]

Yours is a serious post and you've been given serious and good advice but I have to tell you that every time I think of your podgy knees I smile. What a good handle!

 

[Chemmy]

As for your Dad. He is probably exhausted! But feels trapped. There is the issue of the promises he made to your Mum. And then there is the reality. And we can get very stuck between the two. I think a frank discussion with him and saying that it's ok to let go and let someone else do it. After all, it is an illness, and at some point, if an illness is regressive.....most people need professional help. Dementia or Alzeimers is no different.

This is an important point. People, generally, experience far less guilt if their nearest and dearest has to go into hospital. However, when the suggestion is made that their loved one might be looked after by professionals - in a single room, with far better food, companionship and activities, etc - it's often seen as a poisoned chalice.

Coping at home - or not coping, as is so often the case - isn't not always the best option for everyone concerned. And the carer's needs are just as important in my book, and should be considered too.

 

[Podginese]

Thanks to you all for your kind words, wisdom, and advice. Also for taking the time out of you day to get in touch - it really means an awful lot. I've got a few things sorted today - spoke to the social worker, got an appointment with the CPN, chased the continence nurse, and persuaded dad to consider an extra day for mum at the day care group - so I'm feeling a bit more positive. Onwards and upwards!


Sent from my iPad using Talking Point

 

[Podginese]

Yours is a serious post and you've been given serious and good advice but I have to tell you that every time I think of your podgy knees I smile. What a good handle!

Unfortunately, everything is podgy at the moment, I'm an emotional eater and chocolate is sometimes the only solution! Oh well. [emoji4]


Trying to stay positive